This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

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Saturday, October 30, 2010

Yesterday morning I asked the student nurse if I could have some dish washing soap to rinse out my extension set.
After about five minutes the doc on duty walks into my room and questioned me why I needed dish washing soap. "To rinse out my extension set", I replied. What did she think I wanted to do with the dish washing soap....
Yes, and I did get my soap ...

Friday, October 29, 2010

I did not feel like blogging about it as long as I was still on vacation, but here my experiences as a travelling tube girl.

I had called Lufthansa ahead of time and was transferred to their medical operations officer. He assured me that I would be able to get 20 kg extra in medical luggage free of charge. This is something I needed desperately due to the amount of formula I had to bring for my stay.

I had checked in online for us the night before, and therefore we only needed to drop off our luggage at the baggage drop off counter. That's where I was told that the medical operations officer did note in my file that I had medical stuff in my suitcase, but failed to note that this would be free of charge.

I got soooo mad!!! That's why I had called Lufthansa ahead of time! Anyway the woman from ground crew told us that she can't do anything about it, and we had to pay 10 Euros a kilo for every kilo we were over our 40 kg (20 kg per person). Fortunately M is a very light traveller, so we were only three kilos over, but still I was not prepared to pay for that. We then started taking out as much clothes as possible and put it in our carry-on luggage and thankfully that worked out.

Once back home I wrote the medical operations officer I had dealt with an e-mail asking for an explanation and what I could do to prevent that from happening in the future. So far I have received no answer...

Thursday, October 28, 2010

M and I drove back to Lissabon yesterday morning, arrived there at 3 PM, got checked in and waited for another couple of hours until we were finally able to board our plane. We had flown down to Lissabon with TAP and it had been really, really narrow. What a difference it made being on a Lufthansa flight to Frankfurt yesterday. So much more space! We were behind schedule when we left Lissabon, and I really worried that we would have problems catching our connecting flight to Vienna. (That was one of my tube worries, that I would miss my flight, the next one would be in the morning and then I would be late for my tube change in Graz...) We did have to hurry through the terminal, but we ended up easily catching the flight. Back in Vienna we missed the cheaper S-train, had to wait 20 minutes for the fancy CAT (city airport train), then wait again for the subway and make our way home through the cold after having just flown back from summer....

The cats were well and really needy, and somehow we didn't end up sleeping until 1.30 AM. At 5.30 I stopped feeding, had the (not so) brilliant idea of letting the cats into the bedroom and therefore our sleep was very interrupted until we finally had to get up at 7 AM. Got everything ready for my tube adventure and set off for Graz at 8.45. M dropped me off at the clinic at just after 11, got myself checked in, had blood taken and was just getting myself settled in when my gi doc walked into the door. Usually I don't see him until I am down in the endoscopy unit. And the funny thing was that it turned out that he had been in Barcelona on a congress and had missed his connecting flight in Frankfurt to Graz and didn't return until this morning... :-).

The tube change itself was kind of horrible, as I woke up in the middle of it, and I apparently fought everyone very hard and needed more meds to stay asleep. With so many meds on board I needed a bed transport, and the really funny thing was that already in the endoscopy unit I only spoke English (remember - I am in a strictly German speaking hospital) to everyone. It kind of freaked out the nurses and they were happy that back upstairs my husband was waiting for me and able to translate for me. It took a while before I finally started to switch back into German. English, after all, is my "comfort language" - no wonder I only wanted to speak English after such a uncomfortable experience.

My gi doc is very happy that Dr. T. has agreed to change out my tubes in interventional radiology, as he said it was getting harder everytime to keep me under.

I have j-tube feeding since 3 PM now - 9 hours. I am up to 40 ml/h. So far everything is going well. I was even able to eat a bit on the orally, and I did not feel sick because I only had to eat really small portions!!!!

Tuesday, October 26, 2010

M and I are having so much fun! We have been to the beach every day - always exploring different beaches. We are enjoying the warm weather and the sunshine, hard to belive that it is snowing back home. Really does not make me want to fly home tomorrow. :-)

I will post more photos once I am back home, as I have a very slow internet connection here. I am down to two more sleeps before I will have my tube change, and it can't come a day sooner. I am not doing very well with oral foods and have had to reduce my tube feeds too, because I can't feed very fast during the night. I am feeling the lack of energy and am tired all the time, but hey, I am on vacation and I sure enjoy sleeping in with my husband :-).

Sunday, October 24, 2010

Friday, October 22, 2010

I was called yesterday evening that the tube had arrived in Vienna and it will be delivered to me early this morning, just in time before we are off on our mini-honeymoon!

Our flight leaves at 11.20 from Vienna, first to Munich and then off to the ocean and warmer weather! I have booked us a car, and we will be able to drive around and explore the beaches and the ocean. We will return late Wednesday night, only to be off again early Thursday morning for my tube change in Graz.

I am really happy that we are going on vacation now, otherwise I'd be sitting at home and counting down the days and sleeps until my tube change.

Tuesday, October 19, 2010

After I found out yesterday that the tube change in X was not going to happen, I was very disappointed and frustrated and consequently had a very hard time sleeping. It certainly did not help that with M being away for the night I had allowed all three cats to sleep with me in the bedroom, something we never do. Laura, my senior, was the only one who did not interrupt my sleep, but the other two did not contribute to a good night's sleep.

Still, as always, things happen for a reason. Here a recap of the past weeks events:

23rd of Sep - my dietician and I opt to try j-tube-feeding - my gi doc does not want to try

29th of Sep - my obgyn asks me why my tube is in my stomach and consequently encourages me to not give up on j-tube-feeding

7th of Oct - my dietician convinced my GI to place a j-tube

8th of Oct - the hunt for the very cool low-profile Kimberly Clark jejunal tube begins, as it is not being sold in Austria

13th of Oct - a friend of mine tries to get me in for a tube change in X (another European country)

15th of Oct - I receive the confirmation from Nutricia that they will be able to get a low-profile j-tube for me

18th of Oct - my friend in X tells me that the tube switch can't happen, as the gi they had asked to do it is not in the country, I would have to change my flights and stay until Friday, M would travel back home alone

And here it comes:
My very busy GI doc here in Austria has agreed to change the tube next Thursday. The tube we ordered is supposed to arrive this Thursday or Friday. M and I are off on our mini-honeymoon on Friday, back late Wednesday night, will have to tube delivered personally early Thursday morning (the 28th), then drive to Graz to check into the hospital.

All along I have kind off felt uneasy that I had planned the tube switch to happen in X and not with my own GI. I always felt that I might not be wise to get it done somewhere else, as I still need him as my GI.

Now all I need to happen is the tube to arrive on time here in Vienna.

Monday, October 18, 2010

I was informed today that the tube can't be changed out on the 25th or the 26th of October, possibly on the 28th instead. I don't want to go into details, but good friends had actually organized for me to get my new tube at a hospital in Europe that actually has experience with these types of tubes. My return flight is booked for the 27th. Changing the date for the tube exchange means changing my flights and this means having to pay extra.... The tube that was ordered for me has also not yet arrived. And I should really wait for the tube to be at the hospital before I change my flights, but the longer I wait, the more expensive it will get.

Friday, October 15, 2010

After (what felt like) a million e-mails to various people all over Europe, I have organized the following:
I will get my low-profile j-tube (through my existing gastrostoma) either on the 25th or 26th of October. I also have my friend's Dad on board now, who is an interventional radiologist - he will do my tube changes from now on. I still have to call him tomorrow and talk to him in person, but my friend already talked to him today.

I am so looking forward to the switch! And I really hope my jejunum will start to adapt to the feeds quickly.

I will be the only person in Austria that has this fancy Mic-key low-profile j-tube!

Wednesday, October 13, 2010

I had my blood levels checked again on Monday. My iron and ferritin levels are good, but noticeably lower than only 7 weeks ago. I was told that I might not need iron infusions regularly, but if it continues to drop like this, I'll be requiring IV iron again in four to six months.

Additionally, my vitamin D level is below normal again. It was really good after supplementing with oral vitamin D, but I stopped supplementing after I had reached normal levels at the end of August. Actually, my levels were really good then. It is kind of scary to know that I am vitamin D deficient again only 7 weeks later. Especially when you think that statistically vitamin D levels are the highest in the fall due to all the sun exposure.

Obviously malabsorption continues to be a problem.

No news yet on the tube, still keeping my fingers crossed that I will get it soon.

Tuesday, October 12, 2010

I really took a weekend off from the internet, from researching tube stuff, checking my e-mail account for possible replies regarding the tube stuff.

And it felt so good! I was able to relax, spend time with my family, spend time with M, do some shopping with a really good friend, and take much-needed mid-morning naps :-).

Turns out the our car is not damaged beyond repair, actually, according to the mechanic (now loosely related with me, so I guess I can trust him), it is still a really good car and just needs a bit of love and care (and some more repairs...). We therefore left it with my parents and it will be repaired in time for my parents to drive our car to my graduation ceremony next Monday.

Things have been more difficult with getting myself one of those fancy button j-tubes. I did finally find a place in the US where I can order it, will have to pay shipping, but hopefully no customs, as it is a medical product. Additionally, an opportunity has been opening up here in Europe, please keep your fingers crossed that this will work out, as this opportunity would actually mean having a j-button-tube-knowledgeable doc place the first tube. I hope to find out more over the next few days. We have also now determined that a j-button will be sufficient since I don't really need gastric decompression. This are a lot cheaper and therefore more justifiable to insurance. I will also be started on as needed zofran (finally)!

Friday, October 8, 2010

After talking to my dietician this morning, there is still some confusion on our next steps. She had forwarded me my GI doc's e-mail, and he wrote that he can advance a J-tube through the existing gastrostoma, but it would have to be a balloon-type transgastric J-tube. Because this does not entail a new operation (in the sense of having to make a new stoma) this is ethically acceptable. Furthermore, he asked her if she could obtain a balloon-type transgastric J-tube.

The thing is, officially, there are no balloon-type transgastric J-tubes available in Austria. I have already e-mailed two Kim-berly clark distributors in Europe a couple weeks ago, both never replied back. I have also asked the medtech firm that imports my AMT button to find out whether they can order a Mic-key J-tube for me. I have heard from them once 10 days ago that they were going to tell me last week....

My dietician is contacting Nutricia today (they distribute the Mic-key G-button in Austria), and I have e-mailed several Kimberly Clark digestive health partners within the European Union. Of course now the waiting game begins again. It is Friday noon, have not heard back from anyone, therefore assuming that this is it for the week.

If we are able to order a low-profile J-tube, we will still have to get approval from my insurance company....

The next obstacle is whether we really want my gi doc to place the j-tube. Yes, I would have needed him for the JET-PEG, but the way it sounds is that he wants to not place the j-tube endoscopically but do it blind-style??????? No fluoroscopy, no endoscopy, just pushing down that tube - that sounds lovely!!!

The thing is, one of my best friends' Dad is an interventional radiologist, and maybe I could get him to place the tube fluoroscopically? (and maybe with sedation???)

Sometimes I am still wondering if it's worth the fight. I mean I know it is, but shouldn't everything being going a whole lot differently for me?

I am leaving Vienna in a couple of hours to visit my parents, and I have decided to take a computer-free weekend, no researching for tube options, no checking my e-mails ....

My dietician told me yesterday that she is giving two courses today, and that I won't hear anything from her today.
Still, I am nervous, unsure, impatient etc.

In my ideal world, I would receive an e-mail from my GI doc today, telling me that he has reconsidered the GJ-tube topic.

In this Tubegirl's world - no e-mail has been delivered to my inbox so far, contributing to my impatience and worries. I am usually not a worrier, but when it comes to decisions or life-changing events like these, I can't help but think about it - a lot...

I am really scared. I know I am losing weight, hard to believe at 2.400 kcal a day... I don't like losing weight at all, I loved being at a higher weight, having lots of energy, being able to go running a few times a week. I am not running at the moment, knowing that I have no energy to spare.
I know things cannot go on like this. I am supposed to start my internship (full-time) in a few weeks, I am supposed to be functioning then.

Sometimes I am questioning myself if I am working hard enough to get my stomach going. And I am worried that things will continue to go down-hill. And I am having a hard time accepting the fact that I really might need a J-tube to make things easier on my digestive system.

I have not yet heard back from my Mum's TCM (traditional chinese medicine) doc. But knowing that TCM is definitely not a quick-fix, I still think that following other options at least for the now is appropriate.

I am also still trying to find out if I can get my hands on a Kimberly Clark Mic-key GJ-button-tube. The thought that I am having to go back to a traditional style peg-tube with a j-extension is playing on mind too.

M just left to visit his parents in Tyrol, and I am trying to keep myself occupied.
"Get up, dress up, and show up" - that's my motto for the week.

This said, I am going to switch off the computer, go out to run some much needed errands, clean the apartment, and maybe do some sewing and ironing in the evening!

Wednesday, October 6, 2010

After I got such a negative response from my GI doc on the j-tube question, I tried to not dwell on it and improve my situation in other ways. Of course, things continued to not be easy for me. When I saw my Ob-Gyn last week and she asked me why my tube is in my stomach, I could not let go of the j-tube that easily this time around. The past few days have been really difficult again emptyingwise. Not being able to eat enough orally, not being able to compensate with tube feeds.

I have now stopped all sports activity, so I won't need extra energy.
Yesterday, I decided to action again. My OB-Gyn wanted to have my latest blood test results via e-mail. So I asked her if she maybe could talk to my GI doc now - instead of waiting until next spring (that's when she wanted to talk to him in preparation for a pregnancy. I told her that my dietician is all in favor for it too. I sent this e-mail cc to my dietitian as well.

When I got up this morning, I already had a reply from my dietician in my inbox, telling me that it was not necessary to ask my OB-Gyn to talk to my GI doc, she could easily convince him too....
What???? She never told me that....

Anyway, I got to talk to her this afternoon. Until I find out how I can order one of those cool Mic-key GJ- or J-buttons, I will have to make due with a regular GJ-tube. This means at least two endoscopic procedures - one to place a regular PEG-tube and advance a J-tube through it - enabling me to have gastric and jejunal access (here in Austria we don't call it GJ-tube - we call it JET-PEG, and I rather like that name - sounds fun somehow...), and a second one to hopefully replace the JET-PEG with a GJ- or transgastric J-button.

My dietician thinks that my GI doc just is too busy to organize everything and therefore was hesitant to place it.

So she sent him an e-mail this time, asking to trial a GJ-tube with me and also told him that we would organize the necessary tubes....

Please, keep your fingers crossed that this will work out for me, and that my GI doc will come round on that issue.

Tuesday, October 5, 2010

M and I had planned a weekend at my grandparents' cabin in the alps with friends and their little son Theo weeks ago. Even though I wasn't feeling the greatest, I was still looking forward to going away.

Saturday morning came, we fed the cats, packed up the car, and left Vienna for our weekend away at 9 AM. I got all comfortable in the car and fell asleep just out of Vienna (I am an accomplished car sleeper). I woke up to M driving on the emergency lane, telling me to get out the cell phone, so he could call my stepdad (he is the handyman in our family). Turns out that our cooling unit had a problem and the temperature had risen to 130 °C. My stepdad advised us to call the OEAMTC (our auto club) immediately and they sent out a mechanic to come and have a look. I had to call Julia to tell her that we would be late and they should not leave Linz yet, in case we needed to catch a ride with them.

The OEAMTC mechanic came, had a look, sighed and told us that we should not drive that car a single meter or otherwise our engine might break down. Luckily our car broke down just outside of Linz, the mechanic towed us to my parents' house, we parked the car there and were able to continue our journey with my Mum's car.

We all had lunch at the cabin...

... and Theo enjoyed running around in the yard and playing with his Dad...

... while Julia and I rested on the patio.

My Dad just moved to a village a few kilometers away, and I decided to surprise him and my sister and come for a visit. I left the cabin at 7 PM, it had just started raining, and it was slowly getting dark out. I entered the address into my navigation device, but could only enter the village's name, not the address. Well, I thought, no big deal, I will be able to find it. Half an hour later I was getting desperate, there were no street names, just numbers on the houses and I couldn't even see those half the time. I called my stepmother who was away on a course, but she didn't answer. Then I called my uncle, who didn't answer either. Lastly, I decided to blow the surprise and call my Dad, but I couldn't get a hold of him either. I had the car parked in a field, with the lights turned off while trying to reach some part of my family, when I noticed someone approaching with a flashlight. I opened the car door, got out and almost gave the poor woman a heart attack. I guess it is a bit frightening, if you are walking in the dark all by yourself and someone suddenly jumps out of a dark, parked car :-). Anyhow, this woman did not know the address, but when I started telling her that my Dad is a lawyer who just had moved there and it was a really big house, she told me that it could really only be that one big country house. But she told me that it was really difficult to give me directions to get there with me not being from there. So I asked her if she was all right if she got in the car with me and showed me the way. Luckily, she was. (Thank god I am not a man, as she would not have gotten into the car with a man :-) ).

It was the right house, and no, I would have never found the way myself! My uncle's car was parked in front of the house too, therefore it was no surprise to me, when I rang the door bell and my uncle opened the door. He was so surprised that he did not say a single word when he first saw me, and when I motioned him to not say that it was me he told my Dad, who was just coming down the stairs, that it was a neighbour. You should have seen the look on my Dad's face when it turned out to be me!!!

My sister was so cute too. She had just started with school (grade 1), and she showed my every single work sheet that they had worked on in those two weeks of school! I talked to my Dad and uncle for a bit, was given three bottles of really old wine to share with my friends and M, and then drove back to the cabin.

At the cabin M, as always, had put more wood into the fireplace, forgetting, as always, that this fireplace really conserves heat very well and they had 27 °C when I came back!

Theo was already asleep and we chatted for a long time, enjoying each others company before I suddenly realized that the spare mattress M and I needed was located underneath Theo's bed. We had decided that Julia and Michael should sleep in the bedroom with Theo in the king size bed, and we were supposed to sleep in the living room/ kitchen with one of us sleeping on the couch and the other one sleeping on the spare mattress.
Of course there was no way that we would wake up Theo to get to our mattress, so M and I decided to share the couch for the night.

God, what a night. First, it was still really warm due to M adding more wood. Second, we only had a big winter duvet to sleep with - goose feathers - very, very warm. Third, the couch really is not meant for two people. Fourth, a giant spider landed on my neck at some point during the night, with me screeching AFTER I had turned on the light and realizing what it was. Fifth, at some point I decided to move to the floor (wooden with a carpet on it), not a good idea, moved back. Sixth,Theo was up chatting away by 7 AM, meaning that all of us were awake by then too...

After breakfast we got everything ready for a nice hike/walk and took the car to the Wurzeralm,
took the funicular uphill to 1400 m above sea level, and went for a really nice walk/hike up there.

On our way back, Michael overlooked a 50 km traffic sign, and we were held up by the police going 31 km/h above the speed limit. Sigh. We really didn't see it. Michael was supposed to pay 30 Euros, but neither he nor Julia had any money on them. In fact, I was the only one who had money - 20 Euros. Thank god, the police officer was kind enough to drop 10 Euros off the ticket....

On our way home we dropped off my Mum's car in Linz, and Micheal and Julia were kind enough to give us a ride to the train station. We arrived at 6.10 PM, and the train (the really fast one) was supposed to leave at 6.10 PM, but thank god one can always count on the OEBB (our Austrian train company) and the train was 15 minutes late giving us enough time to buy our tickets and something to eat for M.

Unfortunately the train was packed with students, and we could not find two adjoining seats, and so we had to ride separately :-(.

Even though our weekend did not go smoothly, it was so much fun to spend time with our friends and get out of Vienna for the weekend.

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.